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Old 11-08-2011, 11:34 AM   #1
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Feel like I am starting from scratch...

Right, I went to see my GP today to finally get some answers regarding my blood tests and what the Neuro said etc.

First off, this is a different doctor to the one that referred me, so I felt I was starting from scratch with him. I prepared myself to go over everything again from the start.

He met me (they come fetch us from the waiting area) clutching my MRI report. So we talked about that first - the MRI was clear - so he said "you don't have MS". So then I said, well how do you explain my symptoms then? I asked about the blood results, and he found them straight away. He said they are all normal. So I then asked about what I had been tested for - and asked about vit B12. He said "have you been internet-ing?" so I said, yes I have as I am so fed up with not knowing what is wrong with me. Vit B12 levels - normal. Blood glucose - normal. Auto immune antibodies - normal. He said the only thing that wasn't normal was my protein levels, but they weren't high, just more than average. I was on antibiotics for a UTI when I had the blood drawn, so the conclusion we came to is that it was the infection upping the protein levels.
So I asked if I could be tested for Lyme Disease, so I am having that drawn on Friday. He asked me if I have ever been bitten by a tick, and I said "yes" so he was happy to order the test. I then asked him whether the Neuro wanted to see me again, and he said "no, as your MRI was clear".

Then I did what I really, really didn't want to do, and that was burst into tears. I told him how fed up I was, and how I just want to know what is going on, as I had really become cheesed off with the numbness. He said "are you depressed" and I said, no, I am fed up. He said what's the difference, fed up, depressed. I told him I have been depressed, and taken anti depressants in the past, and I am not depressed, just frustrated. I still function, I still go to work, I still get out of bed in the morning - things that I didn't do when I was being treated for depression. He seemed to accept that, and then said right then, I want you to make a double appointment for a few weeks time, I will go through your notes, and we can sit down and talk about what we can do about all this. For the first time I feel like I am being listened to. I just hope that when this appointment arrives, that I don't just end up a sobbing mess and get my symptoms across to him as not just being numb, but the other things that are affecting me too - the muscle twitching, the cognitive issues, the balance problems, and the leg stiffness - some of these have actually appeared since the Neuro appointment and the MRI.

Sorry to offload here. The chances are that I don't have MS, but until I know what it is, the MS will always been in the back of my mind. I really don't want to end up giving up and shutting up, and waiting for it all to go away.

Sarah x

 
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Old 11-08-2011, 11:49 AM   #2
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Re: Feel like I am starting from scratch...

I can empathize with your boiling emotions. Being fed up is certainly not the same as being depressed.

Getting your tests for Lyme could bring some positive results to get you out of limbo land and back down life's journey. Sitting on the sideline is never a fun thing. Were it me, I would rather have Lyme which is treatable, than MS. Do keep us updated no matter the outcome. You are not alone!
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Old 11-08-2011, 12:11 PM   #3
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Re: Feel like I am starting from scratch...

Thanks JayHawk, I really do appreciate your words and reply

I am glad that someone else understands the difference between being fed up and being depressed.

I, too, am still hoping for a curable outcome. Any dx is better than no dx. I think that is what I am most afraid of - no dx.

Sarah x

 
Old 11-08-2011, 03:46 PM   #4
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Re: Feel like I am starting from scratch...

Hi Sarah,
I have copied and pasted a reply I gave to someone else today. (you are not alone, I have been through this too) xx

Hi Fancycat,
I don't know if this will help you but your story sounds kinda similar to mine.....
In Brief: I got glandular fever twice and ended up in the hospital with the second bout. Then the real nightmare began..
I was practically bedridden for 2 years with only managing to stay awake for a few hours a day, I was diagnosed with CFS (main symptoms at that time: Fatigue, mild numbness, vision probs and the general feeling of malaise (like I was constantly coming down with something)

For the next 14 or so years I saw so many neurologists (I think 8 in total), a rheumatologist, immunologist. I had around 13 MRI's 2 lumber punches and all the nerve conduction tests and all came back normal. I had a couple of occasions when my symptoms were bad that my reflexes were brisk but other than that the only thing that was indesputable was the fact I had lost sensation in many areas of my body (like I had a covering over it..so I could feel pressure but no sharp needle)
I ended up being told I had some sort of conversion disorder or maybe CFS but NO WAY did I have MS (My aunt had MS and my gut feeling was I had MS too as I knew all the symptoms I had fit it)

Then in Jab 08 I suffered from a bout of vertigo and then again in October and I still had progressing numbness..it had spread into my mouth, head, legs. My fatigue was up and down, my vision felt like I couldn't see properly but I couldn't explain why, I had a bout of an upset stomach which lasted about 6 months and made me fearful of leaving the house. All my symptoms over that period of time came and went in severity but the numbness was constant.

Anyway in Nov 08 I suddenly experienced a sharp electric shock down my spine when flexing my neck plus constant tingly sensations in my feet. I looked it up and it said L'hermittes which can be associated with MS and a lesion in the cervical spine. I begged the last neuro I had seen to please give me an MRI on my spine if he wanted to catch this disease once and for all but her refused telling me again I did not have MS and it was anxiety and depression (I totally get why you didn't want your dad to speak, the dr's jumped on me saying that all my symptoms were depressionm I have NEVER suffered with depression but once it was on my file I heard the same thing over and over (plus it didn't help when I burst into tears in their office!!)

Anyway so neuro refused me this C-spine MRI so I went to another dr (not a neuro but a back specialist of some sort) and he agreed to give me the scan (basically to shut me up)
Well the report came back that there was a lesion and an area C4-C5 of inflammation. By the time the results came back I was stuggling with dead feeling legs and the pins and needles had got so bad, plus I was now experiencing weak arms and painful eyes.

I sent the report back to my unhelpful neuro who did suddenly spring into action and got me admitted into hospital. There I had my first brain MRI WITH contrast and another MRI on spine as he wanted to check the lesion/inflammation was not an artefact (a spot caused by a faulty MRI)

Well my brain then had 8 lesions and my spine lesion was still there plus I now had a positive lumber punch.

In total I started feeling ill when I was 17 and got diagnosed when I was 31 all my MRI's were clean up until the big relapse of Nov 2008.

I would keep pursuing the dr's as you know when something is not right, don't let them fob you off like they did me! MS can be present with no signs on MRI. I think my body was healing the inflammation so it was not showing up.

Since my diagnosis I have had some really rough relapses. A major bout of vertigo was awful and lasted 3 months and I also had the jumpy eyes and spinning sensation but it did go eventually. I have also had a couple of cognitive relapses and optic neuritis which took out the vision in my left eye for 6 weeks (that is back now about 95% normal)

Hang in there...if you ever want to chat feel free.
Sorry for the long winded story xx

P.S Sarah I am in the UK (London)

Last edited by hamfrie; 11-08-2011 at 03:51 PM.

 
Old 11-08-2011, 04:33 PM   #5
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Re: Feel like I am starting from scratch...

No worries. The more things you can eliminate from possible causes, the closer you can get to a diagnosis. Try to remain patient because if you get stressed you might develop some symptoms which can mess with your results and diagnosis.
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Old 11-09-2011, 03:07 AM   #6
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Re: Feel like I am starting from scratch...

JayHawk, I am really trying hard to be patient - I got so mad with myself for losing my composure in the doctor's office. As a good friend keeps telling me, "what will be, will be"

Searchout, seems like we have a lot in common, my medical history is very very similar to yours. I, too was told I had CFS/ME in 1996 after 18 months of fatigue. I had muscle aches, but no neuro symptoms that I can remember - I think I would have remembered going numb - and the feeling that my limbs were heavy like concrete blocks. I had a period of sleeping for 20 hours out of 24. I was referred to a virologist who told me that although my bloods indicated I had Glandular fever, that it was in fact caused by a UTI. In the end, I had to leave my job, and just dealt with the symptoms as best I could until I felt "normal" again.

Quote:
I had a couple of occasions when my symptoms were bad that my reflexes were brisk but other than that the only thing that was indesputable was the fact I had lost sensation in many areas of my body (like I had a covering over it..so I could feel pressure but no sharp needle)
I ended up being told I had some sort of conversion disorder or maybe CFS but NO WAY did I have MS (My aunt had MS and my gut feeling was I had MS too as I knew all the symptoms I had fit it)
I could have written this word for word, as this is exactly, EXACTLY what is happening with me right now. The main symptom I have is the loss of sensation. It has just about spread everywhere now - including my face, lips, tongue, scalp. I was told at my Neuro appointment that my reflexes were brisk. I, too, have an Aunt with MS, so it is not as though I don't know anything about it. Are you sure you are not me....
I have started having periods of fatigue again, balance issues, and concentration issues. These are the symptoms that the neuro does not know about, and after my dissolving into tears yesterday, my GP doesn't know about them either. What gets me, is that the only constant is the numbness, everything else comes and goes. Which still brings me back to the feeling it could be MS.

Thanks for sharing your story with me, it has been a huge help to realise that there is someone who appears to be just like me...

Sarah x

 
Old 11-09-2011, 06:46 AM   #7
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Re: Feel like I am starting from scratch...

You also have to consider that if you do have MS you may be experiencing emotional threshold problems. I cycle through these and they are difficult to know when they are rearing up. I usually retreat to my "fortress of solitude" until I can regain composure. I would not worry too much, that is, do not "beat yourself up" over these things over which you may not have much control. Frustration is felt by most every MSer who had to trod through Limbo Land. Just take a day at a time, and if need be, take an hour at a time. I am keeping you in my prayers.
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Old 11-09-2011, 06:51 AM   #8
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Re: Feel like I am starting from scratch...

No Worries Sarah...the least I can do is share what happened to me as I at the time was being made to feel like I was crazy and a rare case but the more I speak to others I realise many have been through the same stuff. The numbness was the only constant with me, the stomach issues, fatigue, vision probs came and went. I also had migraine episodes (occluar migraines) where I would lose vision in one eye for 1 minute or so but I have never had migraines or headaches so I think again it was MS related.
If you do have MS it will eventually show so in the meantime my best advice is eat well try and cut out gluten and dairy and make sure your Vit D' B12, Magnesium, zinc levels are normal.
I am still doing ok despite my nasty relapses. I am now on copaxone but to be honest I don't know how much it really does. I also take LDN and supps.
Stay strong and feel free to PM anytime x

 
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